Guest guest Posted June 18, 2009 Report Share Posted June 18, 2009 Hi, Ive been using this group on and off for a while, to get answers and tips about tort and helmeting , for my granddaughter , and its been invaluable. Hope its acceptable and not rude if I ask on here a question about a UK support group The Plagiocephaly Care UK group. Is anyone on here a member, and if so , how did you manage to join? Both my daughter and I have written emails to owner/ admin as suggested, with no reply. As we are in the UK, a group with more local knowledge would be quite useful I think. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2009 Report Share Posted June 18, 2009 Hi, i also signed up to this forum but i live in scotland and now realise most of the people here are not british, i know what you mean by not meaning any offence but i agree attitudes to plagio etc are rather different here than in the states. I did join plagiocephaly Care group but got very little back i felt. My son started helmet treatment around a month ago and i know how difficult it can be. You can contact me at gemini7698@... if you want to share difficulties! take care, Debbie > > Hi, Ive been using this group on and off for a while, to get answers and tips about tort and helmeting , for my granddaughter , and its been invaluable. Hope its acceptable and not rude if I ask on here a question about a UK support group The Plagiocephaly Care UK group. Is anyone on here a member, and if so , how did you manage to join? Both my daughter and I have written emails to owner/ admin as suggested, with no reply. As we are in the UK, a group with more local knowledge would be quite useful I think. Thanks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2009 Report Share Posted June 18, 2009 Hi I am having the same trouble my son started is treatment 2 weeks ago we are at the LOC in Kingston, London. I live in Hampshire and am also happy to chat. shellie.morris@... .. Shellie From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of gemini7698 Sent: 18 June 2009 20:23 Plagiocephaly Subject: Re: UK group Hi, i also signed up to this forum but i live in scotland and now realise most of the people here are not british, i know what you mean by not meaning any offence but i agree attitudes to plagio etc are rather different here than in the states. I did join plagiocephaly Care group but got very little back i felt. My son started helmet treatment around a month ago and i know how difficult it can be. You can contact me at gemini7698@... if you want to share difficulties! take care, Debbie > > Hi, Ive been using this group on and off for a while, to get answers and tips about tort and helmeting , for my granddaughter , and its been invaluable. Hope its acceptable and not rude if I ask on here a question about a UK support group The Plagiocephaly Care UK group. Is anyone on here a member, and if so , how did you manage to join? Both my daughter and I have written emails to owner/ admin as suggested, with no reply. As we are in the UK, a group with more local knowledge would be quite useful I think. Thanks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2009 Report Share Posted June 18, 2009 I was wondering how difficult it is to start a support group. Maybe it is worth starting a new UK group, if the old one isn't open for new members, it seems there would be a few interested people. A while back I also came across an UK plagio group on facebook http://www.facebook.com/group.php?gid=29769266984 Zhyldyz From: pamclayton15 <green.pamela@...>Plagiocephaly Sent: Thursday, June 18, 2009 5:47:16 AMSubject: UK group Hi, Ive been using this group on and off for a while, to get answers and tips about tort and helmeting , for my granddaughter , and its been invaluable. Hope its acceptable and not rude if I ask on here a question about a UK support group The Plagiocephaly Care UK group. Is anyone on here a member, and if so , how did you manage to join? Both my daughter and I have written emails to owner/ admin as suggested, with no reply. As we are in the UK, a group with more local knowledge would be quite useful I think. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2009 Report Share Posted June 18, 2009 Hi Debbie, and Zhyldyz Thanks for your responses. I wasnt aware of the Facebook group, so thanks very much for that. I think that one will do fine for general /local questions . Afraid I wouldnt have a clue about forming new group - definately not techno minded lol! Ill hold on to the email addys, thanks. Strange the proper Uk group already established doesnt seem to be acknowledging new enquiries. Thanks again all. Pam On Thu, Jun 18, 2009 at 9:24 PM, ZK <mezhyldyz@...> wrote: I was wondering how difficult it is to start a support group. Maybe it is worth starting a new UK group, if the old one isn't open for new members, it seems there would be a few interested people. A while back I also came across an UK plagio group on facebook http://www.facebook.com/group.php?gid=29769266984  Zhyldyz From: pamclayton15 <green.pamela@...>Plagiocephaly Sent: Thursday, June 18, 2009 5:47:16 AMSubject: UK group Hi, Ive been using this group on and off for a while, to get answers and tips about tort and helmeting , for my granddaughter , and its been invaluable. Hope its acceptable and not rude if I ask on here a question about a UK support group The Plagiocephaly Care UK group. Is anyone on here a member, and if so , how did you manage to join? Both my daughter and I have written emails to owner/ admin as suggested, with no reply. As we are in the UK, a group with more local knowledge would be quite useful I think. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2009 Report Share Posted June 18, 2009 Actually, I guess now I know there are UK people on here, theres no reason why we couldnt communicate experiences through here. I think it would be a good idea if all posters put their country of origin at the signature of every post? Pam UK On Thu, Jun 18, 2009 at 11:36 PM, Pamela Green <green.pamela@...> wrote: Hi Debbie, and Zhyldyz Thanks for your responses. I wasnt aware of the Facebook group, so thanks very much for that. I think that one will do fine for general /local questions . Afraid I wouldnt have a clue about forming new group - definately not techno minded lol! Ill hold on to the email addys, thanks. Strange the proper Uk group already established doesnt seem to be acknowledging new enquiries. Thanks again all. Pam On Thu, Jun 18, 2009 at 9:24 PM, ZK <mezhyldyz@...> wrote: I was wondering how difficult it is to start a support group. Maybe it is worth starting a new UK group, if the old one isn't open for new members, it seems there would be a few interested people. A while back I also came across an UK plagio group on facebook http://www.facebook.com/group.php?gid=29769266984  Zhyldyz From: pamclayton15 <green.pamela@...>Plagiocephaly Sent: Thursday, June 18, 2009 5:47:16 AMSubject: UK group Hi, Ive been using this group on and off for a while, to get answers and tips about tort and helmeting , for my granddaughter , and its been invaluable. Hope its acceptable and not rude if I ask on here a question about a UK support group The Plagiocephaly Care UK group. Is anyone on here a member, and if so , how did you manage to join? Both my daughter and I have written emails to owner/ admin as suggested, with no reply. As we are in the UK, a group with more local knowledge would be quite useful I think. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2009 Report Share Posted June 19, 2009 HI My son is mow 6 months old and has had a helmet for 3 weeks. He is getting on great with it and I already see improvements. My health visitor told me to grow his hair long and the doctor said it will pop out when he crawls. Thankfully I ignored them and he is doing great. Grandparents have now all come round to the idea as have friends, as for everyone else I’m taking the I don’t care attitude he’s my son. A few people have approached me however, and said that their grandchild, daughter etc had/have a helmet and then long conversation ensue. Good luck and keep us informed of what happens. Shellie UK From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of laurakwah Sent: 19 June 2009 19:32 Plagiocephaly Subject: Re: UK group Hi, my name is and I'm from Northamptonshire in the UK. I have found that everyone has been very negative towards our decision to treat our daughters plagio. Through osteopathy we managed to get it from 18mm to 14mm but she still has a very asymetrical face and ears. People are so opposed to what has been a difficult decision and have even said we will be taking away her individual characteristics! Health visitors and GPs all have had the same " it'll sort itself out/round out " opinion. My daughter is 5 1/2 months and will be going to have her band fitted at Ahead4 babies in two weeks time. I would love to hear from anyone else in the same situation. > > > >> > >> > >> I was wondering how difficult it is to start a support group. > >> Maybe it is worth starting a new UK group, if the old one isn't open for new > >> members, it seems there would be a few interested people. A while back I > >> also came across an UK plagio group on facebook > >> http://www.facebook.com/group.php?gid=29769266984 > >> > >> Zhyldyz > >> > >> ------------------------------ > >> *From:* pamclayton15 <green.pamela@...> > >> *To:* Plagiocephaly > >> *Sent:* Thursday, June 18, 2009 5:47:16 AM > >> *Subject:* UK group > >> > >> Hi, Ive been using this group on and off for a while, to get answers and > >> tips about tort and helmeting , for my granddaughter , and its been > >> invaluable. Hope its acceptable and not rude if I ask on here a question > >> about a UK support group The Plagiocephaly Care UK group. Is anyone on here > >> a member, and if so , how did you manage to join? Both my daughter and I > >> have written emails to owner/ admin as suggested, with no reply. As we are > >> in the UK, a group with more local knowledge would be quite useful I think. > >> Thanks. > >> > >> > >> > >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 Hi My granddaughter is a twin with right tort (getting much better) and 25mm of right plagio asymmetry. She is just over 4 months and getting her cranio helmet from Ahead4babies in Central London hopefully this coming week if all goes well. Like everyone else, my daughter has been through the 'itll resolve itself' stuff with the professionals , but she and her partner arent prepared to take the risk I dont think theyve had much 'resistance' from friends and family though . The latest  Osteopath doesnt think it will resolve fully on its own either, so Im sure theyre making the right decision. The baby also had a shock of hair which didnt lend itself to displaying any signs of plagio at birth , and she also had a reasonable movement range in her neck, so the tort was missed, and my daughter given no instruction for physio , repo, etc. Theres mixed opinion whether the baby was born with tort/plagio or not. As the baby is classed as severe, my daughter was going to try and get it done on the NHS, but of course she and baby's dad  dont want to risk being held up in endless queues and therefore missing important growth spurts, so are diving in solo . I suppose its going to be a right drag trying to get anything done claim wise retrospectively . Im sure our NHS are counting on it! Are you UK girls going to decorate your various bands? Pam UK On Fri, Jun 19, 2009 at 8:19 AM, Shellie <shellie.morris@...> wrote: Thanks for the info didn’t realise facebook had a group will go and have a look  Shellie UK  From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of ZK Sent: 18 June 2009 21:24 Plagiocephaly Subject: Re: UK group  I was wondering how difficult it is to start a support group. Maybe it is worth starting a new UK group, if the old one isn't open for new members, it seems there would be a few interested people. A while back I also came across an UK plagio group on facebook http://www.facebook.com/group.php?gid=29769266984  Zhyldyz  From: pamclayton15 <green.pamela@...>Plagiocephaly Sent: Thursday, June 18, 2009 5:47:16 AMSubject: UK group Hi, Ive been using this group on and off for a while, to get answers and tips about tort and helmeting , for my granddaughter , and its been invaluable. Hope its acceptable and not rude if I ask on here a question about a UK support group The Plagiocephaly Care UK group. Is anyone on here a member, and if so , how did you manage to join? Both my daughter and I have written emails to owner/ admin as suggested, with no reply. As we are in the UK, a group with more local knowledge would be quite useful I think. Thanks.  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 I agree. Harry is classed as severe but we couldn’t wait and I doubt very much the NHS will pay now that we already have. Harry’s helmet already comes with a pattern on it, it has planes, trucks, helicopters and cars on it. Shellie UK From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Pamela Green Sent: 20 June 2009 09:44 Plagiocephaly Subject: Re: UK group Hi My granddaughter is a twin with right tort (getting much better) and 25mm of right plagio asymmetry. She is just over 4 months and getting her cranio helmet from Ahead4babies in Central London hopefully this coming week if all goes well. Like everyone else, my daughter has been through the 'itll resolve itself' stuff with the professionals , but she and her partner arent prepared to take the risk I dont think theyve had much 'resistance' from friends and family though . The latest Osteopath doesnt think it will resolve fully on its own either, so Im sure theyre making the right decision. The baby also had a shock of hair which didnt lend itself to displaying any signs of plagio at birth , and she also had a reasonable movement range in her neck, so the tort was missed, and my daughter given no instruction for physio , repo, etc. Theres mixed opinion whether the baby was born with tort/plagio or not. As the baby is classed as severe, my daughter was going to try and get it done on the NHS, but of course she and baby's dad dont want to risk being held up in endless queues and therefore missing important growth spurts, so are diving in solo . I suppose its going to be a right drag trying to get anything done claim wise retrospectively . Im sure our NHS are counting on it! Are you UK girls going to decorate your various bands? Pam UK On Fri, Jun 19, 2009 at 8:19 AM, Shellie <shellie.morris@...> wrote: Thanks for the info didn’t realise facebook had a group will go and have a look Shellie UK From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of ZK Sent: 18 June 2009 21:24 Plagiocephaly Subject: Re: UK group I was wondering how difficult it is to start a support group. Maybe it is worth starting a new UK group, if the old one isn't open for new members, it seems there would be a few interested people. A while back I also came across an UK plagio group on facebook http://www.facebook.com/group.php?gid=29769266984 Zhyldyz From: pamclayton15 <green.pamela@...> Plagiocephaly Sent: Thursday, June 18, 2009 5:47:16 AM Subject: UK group Hi, Ive been using this group on and off for a while, to get answers and tips about tort and helmeting , for my granddaughter , and its been invaluable. Hope its acceptable and not rude if I ask on here a question about a UK support group The Plagiocephaly Care UK group. Is anyone on here a member, and if so , how did you manage to join? Both my daughter and I have written emails to owner/ admin as suggested, with no reply. As we are in the UK, a group with more local knowledge would be quite useful I think. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 I am thinking of decorating the band with some vinyl stickers and clear varnish, apparently painting can be a chore as you have to put on so many layers of varnish and everytime the helmet is adjusted it will end up being chipped/having to be repainted! > > > > > > > Thanks for the info didn't realise facebook had a group will go and have > > a look > > > > > > > > Shellie UK > > > > > > > > *From:* Plagiocephaly [mailto: > > Plagiocephaly ] *On Behalf Of *ZK > > *Sent:* 18 June 2009 21:24 > > *To:* Plagiocephaly > > *Subject:* Re: UK group > > > > > > > > > > > > > > I was wondering how difficult it is to start a support group. > > Maybe it is worth starting a new UK group, if the old one isn't open for new > > members, it seems there would be a few interested people. A while back I > > also came across an UK plagio group on facebook > > http://www.facebook.com/group.php?gid=29769266984 > > > > > > > > Zhyldyz > > > > > > ------------------------------ > > > > *From:* pamclayton15 <green.pamela@...> > > *To:* Plagiocephaly > > *Sent:* Thursday, June 18, 2009 5:47:16 AM > > *Subject:* UK group > > > > Hi, Ive been using this group on and off for a while, to get answers and > > tips about tort and helmeting , for my granddaughter , and its been > > invaluable. Hope its acceptable and not rude if I ask on here a question > > about a UK support group The Plagiocephaly Care UK group. Is anyone on here > > a member, and if so , how did you manage to join? Both my daughter and I > > have written emails to owner/ admin as suggested, with no reply. As we are > > in the UK, a group with more local knowledge would be quite useful I think. > > Thanks. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 Wonder if the bling your band stickers are much different in stickability and removability from the run of the mill vynil stickers you see in the tat shops here . Your personalized ones sound nice though I must say , how did your son react in the first few days of the helmet? On Sat, Jun 20, 2009 at 11:43 PM, laurakwah <quack@...> wrote: I have just ordered some vinyls from bling your band (an american website) I thought these were preferable as they are harder wearing than stickers, no risk of chipping like paint and they can be removed if necessary (they are like the bedroom wallstickers) we asked the lady to do a pink dinosaur " plagiosaurus " design and she has custom designed us some stickers. > > >> >> > Thanks for the info didn't realise facebook had a group will go and have> > a look> >> >> > > > Shellie UK> >> >> >> > *From:* Plagiocephaly [mailto:> > Plagiocephaly ] *On Behalf Of *ZK > > *Sent:* 18 June 2009 21:24> > *To:* Plagiocephaly > > *Subject:* Re: UK group> >> > > >> >> >> >> > I was wondering how difficult it is to start a support group.> > Maybe it is worth starting a new UK group, if the old one isn't open for new > > members, it seems there would be a few interested people. A while back I> > also came across an UK plagio group on facebook> > http://www.facebook.com/group.php?gid=29769266984 > >> >> >> > Zhyldyz> >> >> > ------------------------------> >> > *From:* pamclayton15 <green.pamela@...>> > *To:* Plagiocephaly > > *Sent:* Thursday, June 18, 2009 5:47:16 AM> > *Subject:* UK group> >> > Hi, Ive been using this group on and off for a while, to get answers and> > tips about tort and helmeting , for my granddaughter , and its been > > invaluable. Hope its acceptable and not rude if I ask on here a question> > about a UK support group The Plagiocephaly Care UK group. Is anyone on here> > a member, and if so , how did you manage to join? Both my daughter and I > > have written emails to owner/ admin as suggested, with no reply. As we are> > in the UK, a group with more local knowledge would be quite useful I think.> > Thanks.> >> > > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 Absolutely fine it was as if he didn’t have a helmet on at all. It makes no difference to him if it is on or off. The only problem we have is that Harry has a mass of hair since birth, (covered up the plagio) so it gets caught when we put the helmet on/off so have to be extra careful. But he was happy to sleep in it straight away, it bothered me more than it did him! Shellie UK From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Pamela Green Sent: 21 June 2009 16:18 Plagiocephaly Subject: Re: UK group Wonder if the bling your band stickers are much different in stickability and removability from the run of the mill vynil stickers you see in the tat shops here . Your personalized ones sound nice though I must say , how did your son react in the first few days of the helmet? On Sat, Jun 20, 2009 at 11:43 PM, laurakwah <quack@...> wrote: I have just ordered some vinyls from bling your band (an american website) I thought these were preferable as they are harder wearing than stickers, no risk of chipping like paint and they can be removed if necessary (they are like the bedroom wallstickers) we asked the lady to do a pink dinosaur " plagiosaurus " design and she has custom designed us some stickers. > > > > > > > Thanks for the info didn't realise facebook had a group will go and have > > a look > > > > > > > > Shellie UK > > > > > > > > *From:* Plagiocephaly [mailto: > > Plagiocephaly ] *On Behalf Of *ZK > > *Sent:* 18 June 2009 21:24 > > *To:* Plagiocephaly > > *Subject:* Re: UK group > > > > > > > > > > > > > > I was wondering how difficult it is to start a support group. > > Maybe it is worth starting a new UK group, if the old one isn't open for new > > members, it seems there would be a few interested people. A while back I > > also came across an UK plagio group on facebook > > http://www.facebook.com/group.php?gid=29769266984 > > > > > > > > Zhyldyz > > > > > > ------------------------------ > > > > *From:* pamclayton15 <green.pamela@...> > > *To:* Plagiocephaly > > *Sent:* Thursday, June 18, 2009 5:47:16 AM > > *Subject:* UK group > > > > Hi, Ive been using this group on and off for a while, to get answers and > > tips about tort and helmeting , for my granddaughter , and its been > > invaluable. Hope its acceptable and not rude if I ask on here a question > > about a UK support group The Plagiocephaly Care UK group. Is anyone on here > > a member, and if so , how did you manage to join? Both my daughter and I > > have written emails to owner/ admin as suggested, with no reply. As we are > > in the UK, a group with more local knowledge would be quite useful I think. > > Thanks. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 we were worried about Lillie's reaction to the consultation etc, our only problem was that she was too nosy and kept turning around when she was meant to be sitting still to see what was going on lol. We shouldnt have any problems with her hair, my poor baby is almost bald... people are always thinking shes a boy! > > > > > > > > > > > Thanks for the info didn't realise facebook had a group will go and have > > > a look > > > > > > > > > > > > Shellie UK > > > > > > > > > > > > *From:* Plagiocephaly > <mailto:Plagiocephaly%40> [mailto: > > > Plagiocephaly <mailto:Plagiocephaly%40> ] > *On Behalf Of *ZK > > > *Sent:* 18 June 2009 21:24 > > > *To:* Plagiocephaly > <mailto:Plagiocephaly%40> > > > *Subject:* Re: UK group > > > > > > > > > > > > > > > > > > > > > I was wondering how difficult it is to start a support group. > > > Maybe it is worth starting a new UK group, if the old one isn't open for > new > > > members, it seems there would be a few interested people. A while back I > > > also came across an UK plagio group on facebook > > > http://www.facebook.com/group.php?gid=29769266984 > > > > > > > > > > > > Zhyldyz > > > > > > > > > ------------------------------ > > > > > > > *From:* pamclayton15 <green.pamela@> > > > *To:* Plagiocephaly > <mailto:Plagiocephaly%40> > > > > > *Sent:* Thursday, June 18, 2009 5:47:16 AM > > > *Subject:* UK group > > > > > > Hi, Ive been using this group on and off for a while, to get answers and > > > tips about tort and helmeting , for my granddaughter , and its been > > > invaluable. Hope its acceptable and not rude if I ask on here a question > > > about a UK support group The Plagiocephaly Care UK group. Is anyone on > here > > > a member, and if so , how did you manage to join? Both my daughter and I > > > have written emails to owner/ admin as suggested, with no reply. As we > are > > > in the UK, a group with more local knowledge would be quite useful I > think. > > > Thanks. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 H ow wonderful Shellie. My daughter took her baby into Ahead for babies in London this morning for a fitting. They just popped the helmet straight on, told them to come back in half an hour, shaved a little off, got them back after 1 hour, shaved a little more, and that was that. Touch wood, D hasnt reacted at all apparently , just accepted it . Remains to be seen how tonight goes however. Dont know whether my daughter is going to continue using the sleepcurve mattress to see if it makes the helmet more comfortable as it would drop into the channel designed for the head. I was surprised to hear that thats it now except for 1hr off at bedtimes. No breaking in period like we hear goes on in some helmeting places. Hope it doesnt cause problems. D will have to have her hair cut too as its so long. At 4 and a bit months she was the youngest baby there, most were over 7mths, but at 25mm asymmetry she wasnt the worst case, there was a 33mm there. No doing the band with bicarb of soda either - instructions strictly alcohol rub only . Be interesting to hear the instructions you get at whichever Ahead for babies you go to. Anyone else anywhere with a Blecher Cranio helmet that had different instructions? Pam UK On Mon, Jun 22, 2009 at 9:24 AM, Shellie <shellie.morris@...> wrote: Absolutely fine it was as if he didn’t have a helmet on at all. It makes no difference to him if it is on or off. The only problem we have is that Harry has a mass of hair since birth, (covered up the plagio) so it gets caught when we put the helmet on/off so have to be extra careful. But he was happy to sleep in it straight away, it bothered me more than it did him!  Shellie UK  From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Pamela Green Sent: 21 June 2009 16:18 Plagiocephaly Subject: Re: UK group  Wonder if the bling your band stickers are much different in stickability and removability from the run of the mill vynil stickers you see in the tat shops here . Your personalized ones sound nice though I must say , how did your son react in the first few days of the helmet? On Sat, Jun 20, 2009 at 11:43 PM, laurakwah <quack@...> wrote:  I have just ordered some vinyls from bling your band (an american website) I thought these were preferable as they are harder wearing than stickers, no risk of chipping like paint and they can be removed if necessary (they are like the bedroom wallstickers) we asked the lady to do a pink dinosaur " plagiosaurus " design and she has custom designed us some stickers. > > >> >> > Thanks for the info didn't realise facebook had a group will go and have> > a look> >> > > >> > Shellie UK> >> >> >> > *From:* Plagiocephaly [mailto:> > Plagiocephaly ] *On Behalf Of *ZK > > *Sent:* 18 June 2009 21:24> > *To:* Plagiocephaly > > *Subject:* Re: UK group> >> > > >> >> >> >> > I was wondering how difficult it is to start a support group.> > Maybe it is worth starting a new UK group, if the old one isn't open for new > > members, it seems there would be a few interested people. A while back I> > also came across an UK plagio group on facebook> > http://www.facebook.com/group.php?gid=29769266984 > >> >> >> > Zhyldyz> >> >> > ------------------------------> > > > *From:* pamclayton15 <green.pamela@...>> > *To:* Plagiocephaly > > *Sent:* Thursday, June 18, 2009 5:47:16 AM> > *Subject:* UK group> >> > Hi, Ive been using this group on and off for a while, to get answers and > > tips about tort and helmeting , for my granddaughter , and its been> > invaluable. Hope its acceptable and not rude if I ask on here a question> > about a UK support group The Plagiocephaly Care UK group. Is anyone on here > > a member, and if so , how did you manage to join? Both my daughter and I> > have written emails to owner/ admin as suggested, with no reply. As we are> > in the UK, a group with more local knowledge would be quite useful I think. > > Thanks.> >> >> >> > > >>  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 H ow wonderful Shellie. My daughter took her baby into Ahead for babies in London this morning for a fitting. They just popped the helmet straight on, told them to come back in half an hour, shaved a little off, got them back after 1 hour, shaved a little more, and that was that. Touch wood, D hasnt reacted at all apparently , just accepted it . Remains to be seen how tonight goes however. Dont know whether my daughter is going to continue using the sleepcurve mattress to see if it makes the helmet more comfortable as it would drop into the channel designed for the head. I was surprised to hear that thats it now except for 1hr off at bedtimes. No breaking in period like we hear goes on in some helmeting places. Hope it doesnt cause problems. D will have to have her hair cut too as its so long. At 4 and a bit months she was the youngest baby there, most were over 7mths, but at 25mm asymmetry she wasnt the worst case, there was a 33mm there. No doing the band with bicarb of soda either - instructions strictly alcohol rub only . Be interesting to hear the instructions you get at whichever Ahead for babies you go to. Anyone else anywhere with a Blecher Cranio helmet that had different instructions? Pam UK On Mon, Jun 22, 2009 at 9:24 AM, Shellie <shellie.morris@...> wrote: Absolutely fine it was as if he didn’t have a helmet on at all. It makes no difference to him if it is on or off. The only problem we have is that Harry has a mass of hair since birth, (covered up the plagio) so it gets caught when we put the helmet on/off so have to be extra careful. But he was happy to sleep in it straight away, it bothered me more than it did him!  Shellie UK  From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Pamela Green Sent: 21 June 2009 16:18 Plagiocephaly Subject: Re: UK group  Wonder if the bling your band stickers are much different in stickability and removability from the run of the mill vynil stickers you see in the tat shops here . Your personalized ones sound nice though I must say , how did your son react in the first few days of the helmet? On Sat, Jun 20, 2009 at 11:43 PM, laurakwah <quack@...> wrote:  I have just ordered some vinyls from bling your band (an american website) I thought these were preferable as they are harder wearing than stickers, no risk of chipping like paint and they can be removed if necessary (they are like the bedroom wallstickers) we asked the lady to do a pink dinosaur " plagiosaurus " design and she has custom designed us some stickers. > > >> >> > Thanks for the info didn't realise facebook had a group will go and have> > a look> >> > > >> > Shellie UK> >> >> >> > *From:* Plagiocephaly [mailto:> > Plagiocephaly ] *On Behalf Of *ZK > > *Sent:* 18 June 2009 21:24> > *To:* Plagiocephaly > > *Subject:* Re: UK group> >> > > >> >> >> >> > I was wondering how difficult it is to start a support group.> > Maybe it is worth starting a new UK group, if the old one isn't open for new > > members, it seems there would be a few interested people. A while back I> > also came across an UK plagio group on facebook> > http://www.facebook.com/group.php?gid=29769266984 > >> >> >> > Zhyldyz> >> >> > ------------------------------> > > > *From:* pamclayton15 <green.pamela@...>> > *To:* Plagiocephaly > > *Sent:* Thursday, June 18, 2009 5:47:16 AM> > *Subject:* UK group> >> > Hi, Ive been using this group on and off for a while, to get answers and > > tips about tort and helmeting , for my granddaughter , and its been> > invaluable. Hope its acceptable and not rude if I ask on here a question> > about a UK support group The Plagiocephaly Care UK group. Is anyone on here > > a member, and if so , how did you manage to join? Both my daughter and I> > have written emails to owner/ admin as suggested, with no reply. As we are> > in the UK, a group with more local knowledge would be quite useful I think. > > Thanks.> >> >> >> > > >>  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 Harry does that to always looking around to see what is going on, I always take his favourite toy with us. Sometimes it works and sometimes it doesn’t! Ah bless, well as you say at least the hair won’t get caught. Are the helmets you have already decorated like Harry’s or do you do it yourself? You’ll have to make it extra girlie. From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of laurakwah Sent: 22 June 2009 14:50 Plagiocephaly Subject: Re: UK group we were worried about Lillie's reaction to the consultation etc, our only problem was that she was too nosy and kept turning around when she was meant to be sitting still to see what was going on lol. We shouldnt have any problems with her hair, my poor baby is almost bald... people are always thinking shes a boy! > > > > > > > > > > > Thanks for the info didn't realise facebook had a group will go and have > > > a look > > > > > > > > > > > > Shellie UK > > > > > > > > > > > > *From:* Plagiocephaly > <mailto:Plagiocephaly%40> [mailto: > > > Plagiocephaly <mailto:Plagiocephaly%40> ] > *On Behalf Of *ZK > > > *Sent:* 18 June 2009 21:24 > > > *To:* Plagiocephaly > <mailto:Plagiocephaly%40> > > > *Subject:* Re: UK group > > > > > > > > > > > > > > > > > > > > > I was wondering how difficult it is to start a support group. > > > Maybe it is worth starting a new UK group, if the old one isn't open for > new > > > members, it seems there would be a few interested people. A while back I > > > also came across an UK plagio group on facebook > > > http://www.facebook.com/group.php?gid=29769266984 > > > > > > > > > > > > Zhyldyz > > > > > > > > > ------------------------------ > > > > > > > *From:* pamclayton15 <green.pamela@> > > > *To:* Plagiocephaly > <mailto:Plagiocephaly%40> > > > > > *Sent:* Thursday, June 18, 2009 5:47:16 AM > > > *Subject:* UK group > > > > > > Hi, Ive been using this group on and off for a while, to get answers and > > > tips about tort and helmeting , for my granddaughter , and its been > > > invaluable. Hope its acceptable and not rude if I ask on here a question > > > about a UK support group The Plagiocephaly Care UK group. Is anyone on > here > > > a member, and if so , how did you manage to join? Both my daughter and I > > > have written emails to owner/ admin as suggested, with no reply. As we > are > > > in the UK, a group with more local knowledge would be quite useful I > think. > > > Thanks. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 My fingers are crossed for you to. I’m sure she will be fine. We started off 1 hr on 1hr off, 2hrs on 1hr off, 4 hrs on 1 hr off then the fourth day straight to full time and sleeping in it. But to be honest we could have gone straight into on day one and slept in it he made more of a fuss with us taking it off! All we do now is ½ hr off in the morning and an hr off in the evening for baths etc. We have alcohol rub too and that’s all we have been told to use. . I was amazed at how many babies are at the clinic before all this I thought we were in a tiny minority and beginning to wonder now... Shellie UK From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Pamela Green Sent: 22 June 2009 15:44 Plagiocephaly Subject: Re: UK group H ow wonderful Shellie. My daughter took her baby into Ahead for babies in London this morning for a fitting. They just popped the helmet straight on, told them to come back in half an hour, shaved a little off, got them back after 1 hour, shaved a little more, and that was that. Touch wood, D hasnt reacted at all apparently , just accepted it . Remains to be seen how tonight goes however. Dont know whether my daughter is going to continue using the sleepcurve mattress to see if it makes the helmet more comfortable as it would drop into the channel designed for the head. I was surprised to hear that thats it now except for 1hr off at bedtimes. No breaking in period like we hear goes on in some helmeting places. Hope it doesnt cause problems. D will have to have her hair cut too as its so long. At 4 and a bit months she was the youngest baby there, most were over 7mths, but at 25mm asymmetry she wasnt the worst case, there was a 33mm there. No doing the band with bicarb of soda either - instructions strictly alcohol rub only . Be interesting to hear the instructions you get at whichever Ahead for babies you go to. Anyone else anywhere with a Blecher Cranio helmet that had different instructions? Pam UK On Mon, Jun 22, 2009 at 9:24 AM, Shellie <shellie.morris@...> wrote: Absolutely fine it was as if he didn’t have a helmet on at all. It makes no difference to him if it is on or off. The only problem we have is that Harry has a mass of hair since birth, (covered up the plagio) so it gets caught when we put the helmet on/off so have to be extra careful. But he was happy to sleep in it straight away, it bothered me more than it did him! Shellie UK From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Pamela Green Sent: 21 June 2009 16:18 Plagiocephaly Subject: Re: UK group Wonder if the bling your band stickers are much different in stickability and removability from the run of the mill vynil stickers you see in the tat shops here . Your personalized ones sound nice though I must say , how did your son react in the first few days of the helmet? On Sat, Jun 20, 2009 at 11:43 PM, laurakwah <quack@...> wrote: I have just ordered some vinyls from bling your band (an american website) I thought these were preferable as they are harder wearing than stickers, no risk of chipping like paint and they can be removed if necessary (they are like the bedroom wallstickers) we asked the lady to do a pink dinosaur " plagiosaurus " design and she has custom designed us some stickers. > > > > > > > Thanks for the info didn't realise facebook had a group will go and have > > a look > > > > > > > > Shellie UK > > > > > > > > *From:* Plagiocephaly [mailto: > > Plagiocephaly ] *On Behalf Of *ZK > > *Sent:* 18 June 2009 21:24 > > *To:* Plagiocephaly > > *Subject:* Re: UK group > > > > > > > > > > > > > > I was wondering how difficult it is to start a support group. > > Maybe it is worth starting a new UK group, if the old one isn't open for new > > members, it seems there would be a few interested people. A while back I > > also came across an UK plagio group on facebook > > http://www.facebook.com/group.php?gid=29769266984 > > > > > > > > Zhyldyz > > > > > > ------------------------------ > > > > *From:* pamclayton15 <green.pamela@...> > > *To:* Plagiocephaly > > *Sent:* Thursday, June 18, 2009 5:47:16 AM > > *Subject:* UK group > > > > Hi, Ive been using this group on and off for a while, to get answers and > > tips about tort and helmeting , for my granddaughter , and its been > > invaluable. Hope its acceptable and not rude if I ask on here a question > > about a UK support group The Plagiocephaly Care UK group. Is anyone on here > > a member, and if so , how did you manage to join? Both my daughter and I > > have written emails to owner/ admin as suggested, with no reply. As we are > > in the UK, a group with more local knowledge would be quite useful I think. > > Thanks. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 We're going to put her name on the front , I always dress her in girly clothes too, usually dresses or smock tops but she always gets people (usually men) calling her chappie or little lad or fellar! > > > > > > > > > > > > > > > Thanks for the info didn't realise facebook had a group will go and > have > > > > a look > > > > > > > > > > > > > > > > Shellie UK > > > > > > > > > > > > > > > > *From:* Plagiocephaly > <mailto:Plagiocephaly%40> > > <mailto:Plagiocephaly%40> [mailto: > > > > Plagiocephaly <mailto:Plagiocephaly%40> > <mailto:Plagiocephaly%40> ] > > *On Behalf Of *ZK > > > > *Sent:* 18 June 2009 21:24 > > > > *To:* Plagiocephaly > <mailto:Plagiocephaly%40> > > <mailto:Plagiocephaly%40> > > > > *Subject:* Re: UK group > > > > > > > > > > > > > > > > > > > > > > > > > > > > I was wondering how difficult it is to start a support group. > > > > Maybe it is worth starting a new UK group, if the old one isn't open > for > > new > > > > members, it seems there would be a few interested people. A while back > I > > > > also came across an UK plagio group on facebook > > > > http://www.facebook.com/group.php?gid=29769266984 > > > > > > > > > > > > > > > > Zhyldyz > > > > > > > > > > > > ------------------------------ > > > > > > > > > > *From:* pamclayton15 <green.pamela@> > > > > *To:* Plagiocephaly > <mailto:Plagiocephaly%40> > > <mailto:Plagiocephaly%40> > > > > > > > > *Sent:* Thursday, June 18, 2009 5:47:16 AM > > > > *Subject:* UK group > > > > > > > > Hi, Ive been using this group on and off for a while, to get answers > and > > > > tips about tort and helmeting , for my granddaughter , and its been > > > > invaluable. Hope its acceptable and not rude if I ask on here a > question > > > > about a UK support group The Plagiocephaly Care UK group. Is anyone on > > here > > > > a member, and if so , how did you manage to join? Both my daughter and > I > > > > have written emails to owner/ admin as suggested, with no reply. As we > > are > > > > in the UK, a group with more local knowledge would be quite useful I > > think. > > > > Thanks. > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 I can dress Harry head to toe in blue or combats are cars and I still get asked if it’s a boy or girl!!! From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of laurakwah Sent: 22 June 2009 20:46 Plagiocephaly Subject: Re: UK group We're going to put her name on the front , I always dress her in girly clothes too, usually dresses or smock tops but she always gets people (usually men) calling her chappie or little lad or fellar! > > > > > > > > > > > > > > > Thanks for the info didn't realise facebook had a group will go and > have > > > > a look > > > > > > > > > > > > > > > > Shellie UK > > > > > > > > > > > > > > > > *From:* Plagiocephaly > <mailto:Plagiocephaly%40> > > <mailto:Plagiocephaly%40> [mailto: > > > > Plagiocephaly <mailto:Plagiocephaly%40> > <mailto:Plagiocephaly%40> ] > > *On Behalf Of *ZK > > > > *Sent:* 18 June 2009 21:24 > > > > *To:* Plagiocephaly > <mailto:Plagiocephaly%40> > > <mailto:Plagiocephaly%40> > > > > *Subject:* Re: UK group > > > > > > > > > > > > > > > > > > > > > > > > > > > > I was wondering how difficult it is to start a support group. > > > > Maybe it is worth starting a new UK group, if the old one isn't open > for > > new > > > > members, it seems there would be a few interested people. A while back > I > > > > also came across an UK plagio group on facebook > > > > http://www.facebook.com/group.php?gid=29769266984 > > > > > > > > > > > > > > > > Zhyldyz > > > > > > > > > > > > ------------------------------ > > > > > > > > > > *From:* pamclayton15 <green.pamela@> > > > > *To:* Plagiocephaly > <mailto:Plagiocephaly%40> > > <mailto:Plagiocephaly%40> > > > > > > > > *Sent:* Thursday, June 18, 2009 5:47:16 AM > > > > *Subject:* UK group > > > > > > > > Hi, Ive been using this group on and off for a while, to get answers > and > > > > tips about tort and helmeting , for my granddaughter , and its been > > > > invaluable. Hope its acceptable and not rude if I ask on here a > question > > > > about a UK support group The Plagiocephaly Care UK group. Is anyone on > > here > > > > a member, and if so , how did you manage to join? Both my daughter and > I > > > > have written emails to owner/ admin as suggested, with no reply. As we > > are > > > > in the UK, a group with more local knowledge would be quite useful I > > think. > > > > Thanks. > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 Well, D has now gone to bed with her helmet on apparently, and so far not found it a problem. My daughter is most relieved. She too is going to look into getting stickers with a name on , and suitable pattern or piccies. Im sending her the Bling your band link .The band by the way, is swivelling around, but Dr Blecher says thats perfectly ok. Says there has to be plenty of room for the head to expand where needed. My daughter is worried that because the head moves sometimes adn the band stays where it is, that it will not work, but we'll have to wait and see at the two week check what happens.  Whiilst at Ahead for babies, they met people who had come all the way from Norway . It would seem there are no such thing as helmeting places there. Pam UK On Mon, Jun 22, 2009 at 8:29 PM, Shellie <shellie.morris@...> wrote: Harry does that to always looking around to see what is going on, I always take his favourite toy with us. Sometimes it works and sometimes it doesn’t! Ah bless, well as you say at least the hair won’t get caught. Are the helmets you have already decorated like Harry’s or do you do it yourself? You’ll have to make it extra girlie.  From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of laurakwah Sent: 22 June 2009 14:50 Plagiocephaly Subject: Re: UK group  we were worried about Lillie's reaction to the consultation etc, our only problem was that she was too nosy and kept turning around when she was meant to be sitting still to see what was going on lol. We shouldnt have any problems with her hair, my poor baby is almost bald... people are always thinking shes a boy! > > > > >> > >> > > Thanks for the info didn't realise facebook had a group will go and have > > > a look> > >> > >> > >> > > Shellie UK> > >> > >> > >> > > *From:* Plagiocephaly > <mailto:Plagiocephaly%40> [mailto:> > > Plagiocephaly <mailto:Plagiocephaly%40> ] > *On Behalf Of *ZK> > > *Sent:* 18 June 2009 21:24> > > *To:* Plagiocephaly > <mailto:Plagiocephaly%40> > > > *Subject:* Re: UK group> > >> > >> > >> > >> > >> > >> > > I was wondering how difficult it is to start a support group. > > > Maybe it is worth starting a new UK group, if the old one isn't open for> new> > > members, it seems there would be a few interested people. A while back I> > > also came across an UK plagio group on facebook > > > http://www.facebook.com/group.php?gid=29769266984> > >> > >> > >> > > Zhyldyz > > >> > >> > > ------------------------------> > >> > > > *From:* pamclayton15 <green.pamela@>> > > *To:* Plagiocephaly > <mailto:Plagiocephaly%40> > > > > > *Sent:* Thursday, June 18, 2009 5:47:16 AM> > > *Subject:* UK group > > >> > > Hi, Ive been using this group on and off for a while, to get answers and> > > tips about tort and helmeting , for my granddaughter , and its been> > > invaluable. Hope its acceptable and not rude if I ask on here a question > > > about a UK support group The Plagiocephaly Care UK group. Is anyone on> here> > > a member, and if so , how did you manage to join? Both my daughter and I> > > have written emails to owner/ admin as suggested, with no reply. As we > are> > > in the UK, a group with more local knowledge would be quite useful I> think.> > > Thanks.> > >> > >> > >> > > > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 I've heard that in other countries where the back to sleep campaign was instigated a lot of parents used goi goi pillows, by the time we found out about these Lillie's plagio was too severe for it to be of any use. If we have any more children and they seem to be strongly prefering a side they will be straight off to the osteopath! My partner recognised lillie's tort at 5 weeks but it was dismissed time and time again, the health visitor even waved her keys to try and get her to turn her head to her right and said " oh arent you a little monkey " and said it would be fine! Lillie couldnt turn her head to her right at all and now she has almost full mobility and much less tilt, the osteopath has done wonders... its strange because it really doesnt look like she does a lot. Physical therapy sounds a lot more brutal all the twisting and stretching. The lady on bling your band is really nice, i guess they are quite expensive really but it looks like she gets some really nice results. She said shipping to the UK would probably be $7 dollars, I'm waiting to get the measurements of Lillie's helmet before she makes them for me. > > > > > > > > > > > > > > > > > > > Thanks for the info didn't realise facebook had a group will go and > > have > > > > > a look > > > > > > > > > > > > > > > > > > > > Shellie UK > > > > > > > > > > > > > > > > > > > > *From:* Plagiocephaly <Plagiocephaly%40> > > > <mailto:Plagiocephaly%40<Plagiocephaly%2540>> > > [mailto: > > > > > Plagiocephaly <Plagiocephaly%40><mailto: > > Plagiocephaly%40 <Plagiocephaly%2540>> ] > > > *On Behalf Of *ZK > > > > > *Sent:* 18 June 2009 21:24 > > > > > *To:* Plagiocephaly <Plagiocephaly%40> > > > <mailto:Plagiocephaly%40<Plagiocephaly%2540>> > > > > > > > *Subject:* Re: UK group > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I was wondering how difficult it is to start a support group. > > > > > Maybe it is worth starting a new UK group, if the old one isn't open > > for > > > new > > > > > members, it seems there would be a few interested people. A while > > back I > > > > > also came across an UK plagio group on facebook > > > > > http://www.facebook.com/group.php?gid=29769266984 > > > > > > > > > > > > > > > > > > > > Zhyldyz > > > > > > > > > > > > > > > ------------------------------ > > > > > > > > > > > > > *From:* pamclayton15 <green.pamela@> > > > > > *To:* Plagiocephaly <Plagiocephaly%40> > > > <mailto:Plagiocephaly%40<Plagiocephaly%2540>> > > > > > > > > > > > > > *Sent:* Thursday, June 18, 2009 5:47:16 AM > > > > > *Subject:* UK group > > > > > > > > > > Hi, Ive been using this group on and off for a while, to get answers > > and > > > > > tips about tort and helmeting , for my granddaughter , and its been > > > > > invaluable. Hope its acceptable and not rude if I ask on here a > > question > > > > > about a UK support group The Plagiocephaly Care UK group. Is anyone > > on > > > here > > > > > a member, and if so , how did you manage to join? Both my daughter > > and I > > > > > have written emails to owner/ admin as suggested, with no reply. As > > we > > > are > > > > > in the UK, a group with more local knowledge would be quite useful I > > > think. > > > > > Thanks. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 Annoying isnt it. D's  twin sister  is facially  daintier so people often presume D is a boy , yes, despite the pink, so I know what you mean. Pam UK On Mon, Jun 22, 2009 at 9:17 PM, Shellie <shellie.morris@...> wrote: I can dress Harry head to toe in blue or combats are cars and I still get asked if it’s a boy or girl!!!  From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of laurakwah Sent: 22 June 2009 20:46 Plagiocephaly Subject: Re: UK group  We're going to put her name on the front , I always dress her in girly clothes too, usually dresses or smock tops but she always gets people (usually men) calling her chappie or little lad or fellar! > > > > > > > > > > >> > > > Thanks for the info didn't realise facebook had a group will go and> have> > > > a look> > > >> > > >> > > > > > > > Shellie UK> > > >> > > >> > > >> > > > *From:* Plagiocephaly > <mailto:Plagiocephaly%40> > > <mailto:Plagiocephaly%40> [mailto: > > > > Plagiocephaly <mailto:Plagiocephaly%40> > <mailto:Plagiocephaly%40> ]> > *On Behalf Of *ZK> > > > *Sent:* 18 June 2009 21:24> > > > *To:* Plagiocephaly > <mailto:Plagiocephaly%40> > > <mailto:Plagiocephaly%40> > > > > *Subject:* Re: UK group> > > >> > > >> > > >> > > >> > > >> > > >> > > > I was wondering how difficult it is to start a support group. > > > > Maybe it is worth starting a new UK group, if the old one isn't open> for> > new> > > > members, it seems there would be a few interested people. A while back> I > > > > also came across an UK plagio group on facebook> > > > http://www.facebook.com/group.php?gid=29769266984 > > > >> > > >> > > >> > > > Zhyldyz> > > >> > > >> > > > ------------------------------> > > > > > > > > > *From:* pamclayton15 <green.pamela@>> > > > *To:* Plagiocephaly > <mailto:Plagiocephaly%40> > > <mailto:Plagiocephaly%40> > > > > > > > > *Sent:* Thursday, June 18, 2009 5:47:16 AM > > > > *Subject:* UK group> > > >> > > > Hi, Ive been using this group on and off for a while, to get answers> and> > > > tips about tort and helmeting , for my granddaughter , and its been > > > > invaluable. Hope its acceptable and not rude if I ask on here a> question> > > > about a UK support group The Plagiocephaly Care UK group. Is anyone on> > here> > > > a member, and if so , how did you manage to join? Both my daughter and > I> > > > have written emails to owner/ admin as suggested, with no reply. As we> > are> > > > in the UK, a group with more local knowledge would be quite useful I> > think. > > > > Thanks.> > > >> > > >> > > >> > > > > > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 I used a goi goi pillow and repositioning but it didn’t work because of Harry preferring one side. I think like you if we have any more children it will be straight to the Osteopath too. Just a shame health visitors aren’t onboard too. Shellie UK From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of laurakwah Sent: 22 June 2009 22:43 Plagiocephaly Subject: Re: UK group I've heard that in other countries where the back to sleep campaign was instigated a lot of parents used goi goi pillows, by the time we found out about these Lillie's plagio was too severe for it to be of any use. If we have any more children and they seem to be strongly prefering a side they will be straight off to the osteopath! My partner recognised lillie's tort at 5 weeks but it was dismissed time and time again, the health visitor even waved her keys to try and get her to turn her head to her right and said " oh arent you a little monkey " and said it would be fine! Lillie couldnt turn her head to her right at all and now she has almost full mobility and much less tilt, the osteopath has done wonders... its strange because it really doesnt look like she does a lot. Physical therapy sounds a lot more brutal all the twisting and stretching. The lady on bling your band is really nice, i guess they are quite expensive really but it looks like she gets some really nice results. She said shipping to the UK would probably be $7 dollars, I'm waiting to get the measurements of Lillie's helmet before she makes them for me. > > > > > > > > > > > > > > > > > > > Thanks for the info didn't realise facebook had a group will go and > > have > > > > > a look > > > > > > > > > > > > > > > > > > > > Shellie UK > > > > > > > > > > > > > > > > > > > > *From:* Plagiocephaly <Plagiocephaly%40> > > > <mailto:Plagiocephaly%40<Plagiocephaly%2540>> > > [mailto: > > > > > Plagiocephaly <Plagiocephaly%40><mailto: > > Plagiocephaly%40 <Plagiocephaly%2540>> ] > > > *On Behalf Of *ZK > > > > > *Sent:* 18 June 2009 21:24 > > > > > *To:* Plagiocephaly <Plagiocephaly%40> > > > <mailto:Plagiocephaly%40<Plagiocephaly%2540>> > > > > > > > *Subject:* Re: UK group > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I was wondering how difficult it is to start a support group. > > > > > Maybe it is worth starting a new UK group, if the old one isn't open > > for > > > new > > > > > members, it seems there would be a few interested people. A while > > back I > > > > > also came across an UK plagio group on facebook > > > > > http://www.facebook.com/group.php?gid=29769266984 > > > > > > > > > > > > > > > > > > > > Zhyldyz > > > > > > > > > > > > > > > ------------------------------ > > > > > > > > > > > > > *From:* pamclayton15 <green.pamela@> > > > > > *To:* Plagiocephaly <Plagiocephaly%40> > > > <mailto:Plagiocephaly%40<Plagiocephaly%2540>> > > > > > > > > > > > > > *Sent:* Thursday, June 18, 2009 5:47:16 AM > > > > > *Subject:* UK group > > > > > > > > > > Hi, Ive been using this group on and off for a while, to get answers > > and > > > > > tips about tort and helmeting , for my granddaughter , and its been > > > > > invaluable. Hope its acceptable and not rude if I ask on here a > > question > > > > > about a UK support group The Plagiocephaly Care UK group. Is anyone > > on > > > here > > > > > a member, and if so , how did you manage to join? Both my daughter > > and I > > > > > have written emails to owner/ admin as suggested, with no reply. As > > we > > > are > > > > > in the UK, a group with more local knowledge would be quite useful I > > > think. > > > > > Thanks. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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